Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. Brooke Enos says:

    Nearly two years ago, my right leg stopped working. When I tried to use it, I had an incredible amount of spasming of my sciatic nerve as well as muscle spasms in my back and leg. I was diagnosed with a large Tarlov cyst near my tailbone. All the doctors I have seen, including 4 neurosurgeons have told me these do not cause symptoms. I believed them. Four surgeries later, I have only worsened and now can not even sit or stand. I have been to the hospital 20 times including 3 ambulance rides. The hospitals have labeled me as a drug seeker.
    My life is ruined. I lay in bed 24 hours a day. Every. Day. A medical orphan.
    I found out there is a doctor in Dallas, Texas that does this surgery. At this point, surgery is 6-8 months away. This is an unfathomable time frame to me. I will need a special type of private airplane to even get there. If you have any ideas on how to get in sooner or want to offer support, please email me at Thank you

  2. If you need any support or have any questions feel free to contact me at I have had the surgery & live in the Metroplex. Had 6 Cysts total.

  3. Linda in Dallas says:

    I have read through all of your comments and totally feel your pain. I have much of the same back history as many of you, with two lumbar surgeries after a fall in 2003. Like most of you with any back pain history and MRI imaging, Tarlov Cysts were never mentioned. Spinal stenosis..yes, herniated and bulging disc…yes, scoliosis….yes – but no mention of any Tarlov Cysts. I have only learned that I have Tarlov Cysts at S1-S2 in the past month when I had the last lumbar MRI and I have now seen 3 orthopedic surgeons that do not think the TC is an issue. I was scheduled for a steroid epidural next week, but I have canceled after readying about the dangers of this with TC. I made an appointment with Dr Feigenbaum for late November, but my primary care referred me to a neurologists first to have all the information I can possibly gather. I have a really great relationship with my PC. After all the surgeries and treatments that I have had since my fall in 2003 I believe in the bottom of my heart that all my tailbone, buttocks and leg pain are from this rare disorder. Praying for all of us with this disorder to have a good and healthy outcome. Blessings ~Linda

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